Time passes differently when you have limited energy. What might take a day before now takes a week or more, and gradually we get isolated from the world, because it’s not possible or practical to be more engaged.

The thought of going back out into the world can be overwhelming. When we know the expected impact of the energy use it would take to go to the park or to a show, the thought of crashing again can be terrifying.

Trips can also feel like a huge burden on others, as we may need support in some ways. So our horizons gradually shrink and the thought of being back out in the world can seem overwhelmingly scary or just impossible.

As we isolate from the world, we start to forget that we too are part of it.

A trip out

I recently went to a show with my friend. It was booked almost a year ahead and was a huge trip for me, involving travel to London and a hotel near the venue. It was made possible by my parents handling the travel, and my powered wheelchair making it possible to get around.

I made a pacing plan in advance, where I spent meals with my friend and rested in-between, before going out to the show in the evening.

I was very apprehensive that the length of the show would be overwhelming, and in the weeks leading up I had all sorts of catastrophising thoughts about having to leave or crashing during the show. That’s to be expected, and I spent a lot of time using the STOP process to work with these patterns. Researching the accessibility options for the venue also helped, so I knew that there were accessible toilets and support if needed.

In reality, the show picked me up and I made it through and had a great time. I was drained but also elated. It felt like my social batteries were recharged, even though my physical batteries were depleted.

It was truly wonderful seeing my friend and being out around people again, and I stay that as an introvert. Just seeing the hubbub and flow of people helps connect you back to normal life, which can seem so distant when you’re stuck at home all the time.

In the days after, I did get big dips of energy, but I was expecting them and just listened to my body and rested. I think of the dip as part of the cost of the show. For regular pacing it wouldn’t be worth it, but as an occasional treat and way to get out into the world, it absolutely was, and I’d encourage you to think about whether there are options for you to get out in a similar way.

Reconnecting with the world

It doesn’t need to be a big trip. You could plan to go to a show, or out for a meal, or something more gentle like going to the park, sitting on a bench and letting the world go by. I particularly like garden centres, which are usually wheelchair accessible. For me it’s being out around people again that makes the difference, and being around nature is wonderful too.

It’s worth considering a holiday away, even if it seems impossible at the moment. The big challenge is usually the travel, but it can be gentle once you’ve arrived.

Last year I did a trip away for a week, but crashed on arrival and spent most of the time in bed. My lesson is that it’s essential to rest as soon as you arrive on the first day, as the travel will be a huge energy usage. Don’t do anything else that day, even though you’ll be tempted. Take the next day gently too, and then ease into trip. I’ve been better at pacing subsequent trips and they’ve been really rewarding as I’ve focused on appreciating the things I can do, even if it’s less than before.

There are practical limits to this, and when I was bedbound it wouldn’t have been possible. At my current Moderate level, it became possible over time as I practiced lowering stress levels, pacing and building reserves, and that’s a good reason to keep building those habits like meditation and using the STOP process.

Building confidence

Doing what feels like a bigger trip, like my weekend away, gives you confidence that you’re more resilient than you might think. You can’t spend energy with abandon - there’s still the Post Exertion Malaise price to pay - but in my case I found I could get through a whole evening show, around 4 hours, when I usually don’t do anything for more than 1.5 hours max.

If you do have a big crash after a trip, that’s normal even though it feels awful. Pacing whilst trying to engage with the world is a difficult balance, so give yourself credit for the effort you’re putting in.

Having done a few bigger trips over the last few years, I’ve built up confidence that I can manage more than I thought I could. I have a better idea of how to pace my way through successfully, and I know how much of an emotional and social boost it gives me to be out in the world in this way again.

There’s also the pleasure of anticipation that you get from having something booked.

As always, listen to your body, be kind to yourself and don’t forget that you are part of the world too.